I'm SO angry with my rheumatologist right now!! I was given an antibody test recommended by the Mayo clinic and I tested positive for Sjogren antibodies yet he REFUSES to acknowledge the results. Instead he diagnosed me with Polymyositis. Meanwhile, I've been running to a GI specialist, neurologist, OB/GYN, optometrist, hematologist, and even a psychiatrist for all of these symptoms only because my doctor won't believe the results. This is why he asked for the consult with the clinic in the first place, he couldn't figure out what was wrong with me. Even my fibromyalgia, anemia, and depression is because of Sjogren's ??!!!? 😫 ALL I can do is cry right now yet I'm extremely grateful to finally stumble across this video. I'm dealing with kidney dysfunction now and was just talking with my husband about dialysis options . This disease has robbed me of so much that I was feeling defeated. Now, that I know the truth I'll find a doctor who actually will help instead of allowing me to suffer like this
I'm sorry you're going through this. Unfortunately, there's no way to reverse the damage. I now have GY problems because of S'jogrens. Try Humira, it might help slow down with progression. Take care and stay well.
La Dra Diana es merecedora de un reconocimiento está muy preparada y es admirable su paciencia para instruir a los a pacientes , si ustedes la pueden ir a consultar no esperen más y háganlo , Por su enorme empatía es que podemos comprender la enfermedad quienes la padecemos 🙏🇲🇽
It is indeed a debilitating disease- it has completely robbed my quality of life. I am 61 and was diagnosed at 46. This is a very serious disease. I am in the midst of filing for disability - I simply can’t function to work anymore. Intense pain and exhaustion/ brain fog and now excessive daytime sleepiness. My dental issues for many years ended up with full prostheses. My feel like someone is hammering them at night. My cough is like that of a daily smoker - and I had a serious bout with pneumonia and a pleural effusion and collapsed lung 2 years ago. I thought I was dying. My SED rate is always elevated and now so is my bilirubin. I deplore this disease and actually think I has this as a very young child. I also have Ankyliosing Spondiltis. Not sure what will happen to me if not approved for disability. My flares are weekly now.
It’s sad how many doctors still think Sjogren’s is “just dry eyes and dry mouth” and don’t know or warn their patients about all these other symptoms/complications.
The patient she describes could be me. What she outlayed was exactly my history. I am 77 and have been misdiagnosed and even mistreated for everything in the book when all I have is Sjogren's disease. The deterioration of the knee joints I have suffered from is not Rhuematoid, nor is it arthritis. It's Sjogren's erosion. I have read that medication to treat our disease is at long last now being developed to help us. I celebrate that finally many younger people will not have to suffer the horrible mistreatment I and millions of others have suffered.
That’s what I thought it was- just dry eyes and mouth. No one told be different. This information is vital for doctors to know! Things are beginning to all make sense, now.
I wish I could see a Dr like yourself. My rheumoltologist dismisses me every 6 months and says that my digestive symptoms, extreme fatigue, brain fog and pain are due to something else. Ive had countless tests run by varying doctors but even my gynecologist believes it to all be Sjogrens related. Why is it seeminly impossible to find a knowledgeable and compassionate rheumatologist? Mine gives me my Plaquenil and sends me on my way never listening or helping with my other symptoms. My stomach hurts day and night no matter the diet I eat and my exhaustion makes living a normal life very difficult. I
I was very lucky. My dad diagnosed me with Sjogren’s when I was in my twenties. Since I’d already moved away, though, he wasn’t my regular doctor. Since he passed away five years ago, I sure miss being able to call him up with questions. My pain levels have gone way down, by the way, with a carnivore diet.
@AspenCreekLarkspur that's amazing. I'm hearing so many great testimonies with carnivore. I feel sick everyday so im considering carnivore. I'm trying to stick with keto but I eat honey. It's probably defeating the whole purpose.......thank you for sharing. God bless
@@Becca0082 Red meat is the best, for example from cows, sheep etec, these ruminant animals have four stomachs to detox and ferment out the bad stuff. I live on beef and lamb. I did try a diet of just pork and it had adverse affects, becuase just like chicken, you end up absorbing all the rubbish they eat. In the UK, you can get grass fed beef from Lidl.
I was diagnosed with Lupus in 2017, and Sjögren’s in 2023. I think people should have autoimmune panel run more often than not, in order to get medication and avoid decades of excessive suffering. Thank you for your thorough coverage of this medical condition.
I was diagnosed with Lupus in 1994. Since then I've been diagnosed with Non diabetic neuropathy, fibromyalgia, RA, vasculitis in muscles and brain, trigeminal neuralgia, virtigo, and lastly I'm now thought to have Sjogerns disease. I also have lost my teeth over the years even though I've never had a cavity as child. Total of four cavities in 20's and 30's. That was explained as side effect of IVG treatments. It seems very common for Lupus patients to end up with a long list of diagnoses over the years. I'm 60 now so almost thirty years of different symptoms and diagnoses.
@@KarenSutherland-yv4kv I am so sorry that you are going through these illnesses. They are indeed stressing and debilitating. I’ve had some good luck lately with a tiny pinch of prednisone alongside my hydroxychloroquine. I’m a little older than you however I remember symptoms now identified as SLE Lupus, from when I was a pre-teen. I was finally diagnosed when I was 57. And it was my suggestion to my doctor that maybe I have Lupus. Imagine that. So she ran the tests, and there it was. Sometimes you have to shake your doctor up to make them take that extra step.
Thank you for highlighting the serious systemic issues associated with Sjogren's. I was diagnosed in 2020 after developing symptoms consistent with a viral infection. When the symptoms persisted, my PCP referred me to a rheumatologist as it was suspected that I had an autoimmune condition. I was 62 at the time and considered to be quite healthy before Sjogren's. Since then, I've developed inflammatory arthritis, muscle pain, touch sensitivity, neuropathy, arrythmias, and hypertension in addition to all the dryness issues. Most notably I was diagnosed with PAH in 2022. Although I've been blessed with a wonderful team of physicians, there are too many physicians that know very little about Sjogren's systemic effects. As a patient, it is important to educate yourself about Sjogren's, report all symptoms even if they seem insignificant, and advocate for yourself.
I was tested last June for Sjogrens by having a lip biopsy done. The test results were negative. I still have dry eye syndrome, I have fibromyalgia, I have very dry mouth with mapping, now I was diagnosed in January with LSC. Lichen Simplex Chronicus. I also have UC. But my rheumatologist wanted to treat me with Plaquenil but I said no way since I do not have a solid diagnosis. But a lot of symptoms sure heads that way. I’m at a loss……
Since Sjögrens are regarded as a low status women illness little is known by regular doctorss. Even if my dr say I have it, I have never heard of 90% of the symphtoms.
@@2069CalIT takes years and years, and a good doctor to get the right diagnosis. Its a battle, like with all low status women illnesses. Dont ever give up finding the doctor that finally can help you.
I accidentally came across your channel. You are too good as you stick to the fact without beating around the bush or giving unnecessary lengthy explanations. You speak short, concise and straight to the point. Hats off to you.
11min 35 seconds just because there’s no cure doesn’t mean there aren’t treatments that can help with the symptoms and prevent more serious consequences. This was helpful.
I have SS but I went on an elimination diet in Feb & within a week I could have a fan blowing on me & wa la eyes didn't dry out .. My eyes feel wet for the first time in 10 years.. Get off sugar and carbs.
I can literally weep because she is the first doctor who is an expert on this debilitating disease. Thank you a million times over. Thank you for bringing attention to this disease that a lot of professionals and non professionals never even heard of.❤❤❤❤❤❤❤
From my experience trauma plays a big role in this as well as gene mutations, vitamin mineral deficiencies and diet. Treat these 4 factors plus incresse gluathione production to cleanse the liver and it becomes much more manageable. All ot these areas of the body are affected by poor methalation. Some meds are actually very dangerous for this like birth control or methotrexate and folic acid cuts off the ability to absorb folate and b12. Often the treatments make auto immune much worse because we are sensitive to everything that the body percieves as foreign. Battling auto immunity is so so disabiling. I pray for everyone struggling ❤❤❤
This is me!!!! Just got thrown from 1 doc With pills to another. I was originally told I had lupus and RA. Severe pain couldn’t walk and debilitating fatigue (sleeping for days on end) not exaggerating. running low grade fevers. It was a 3 year nightmare! I wish I could find a Doctor like you in my area that actually listens and cares! I had a wonderful rheumatologist but she moved away.
I’ve had a sjogrens diagnosis for 25 years, post pregnancy, after many false diagnoses & mislabelling. Unfortunately here in Scotland a Sjogrens diagnosis is just another label. I’ve got almost all of the 10 signs that u mention, thankfully not lymphoma, but post diagnosis I was told it was a very minor issue & have spent that last 25yrs treating the symptoms & battling it myself. It’s ruined my life & led to chronic disabilities. Thank you for your videos they are very informative. I only wish rheumatologists here took this condition seriously rather than treating it as a non-issue & largely psychological in nature.
I'm so sorry to hear about your struggles with Sjogren's syndrome. It's unfortunate that the condition is not taken seriously in some places. Stay strong!
Well ain't it a fact, the great British NHS (complete BS) I'm also treated the same as yourself or more to fact not treated. Fibromyalgia has wrecked me over the years, now I'm older (60 male UK) I swear this FMS has put 15/20yrs on me and somedays I can barely function at all. ❤
As a long time Sjogren’s and SLE patient, I find this video absolutely the most informative and comprehensive on Sjogren’s disease and I appreciate your thoroughness. I knew Sjogren’s was so much more than dry eyes and dry mouth, but there are still things I learned from this video. I’m looking forward to checking out your library, there’s clearly much more I can learn. Thank you.
Really appreciate what you have shared about sjogrens, I may have it and it began 30 years ago, but I became so beat up by doctors because my symptoms were all over. I did have all kinds of blood test, my thyroid crashed with hashimotos, I had sicca syndrome, my eyes are so incredibly dry, vision really blurred, all kinds of cavities and root canals, with some strange bony like growths on my gum line. In the beginning I ran a low grade fever 99 to 101 daily for several years, I became peri menapausal at 36 and stopped having periods all together at 40. I used to walk to work every day for 7 yrs. without any problems, but once this began I started to lose feeling in my feet, developed significant shin splints and shut muscles down in my legs, I had to stop walking. Also developed COPD, a hiatal hernia (food was constantly getting stuck in my throat, which is really painful). Muscles and tendons are a mess, I keep getting horrible spasms even around my midsection, Charly horses in my calves and hamstrings, hands etc. I had chronic anemia, my brain feels horrible with all kinds of migraines, heavy fog and a floating like sensation, ptosis, eye bleeds where a vein pops and a sac of blood forms, some form of arthritis, super dry skin, multiple chemical sensitivities. In the beginning a positive ANA 1-640, chirossis, and many other positive test, it's just been a nightmare. One important caveat, When I was about 30 I stupidly got breast implants because I was so small, a triple A on the Right and a double A on the left, it was less than a year after I slowly began to develop this nightmare list of symptoms. One was ruptured and they both burned my chest wall all the time so I had them removed and did not replace them hoping I would get better. I now have ptsd dealing with physicians so I gave up going, I'm 68 now it's certainly been a humbling experience but listening to your video I may get up the courage to try again. Thank you so much for addressing this issue.❤️👍
You just described me … I’ve completely given up on Doctors and the fatigue is mind blowing it completely stops your world… but I want to feel better I’ll be 50 in a few months I would love to have my life back ..
tracieelrod7018, Really sorry to hear that you are suffering too. There are good doctors out there, but financially they are out of reach for me anyway. Did you get breast augmentation, or are and if so, did you get them removed? Or is it that my symptoms without the above sound like yours?
Yep, all the symptoms and more in my case, but doctors just think it is fibromyalgia or simple ignore the whole picture. All my life I have been suffering with every symptom you can mention and now palpitations and nausea are out down to anxiety ! Had a "Stroke" but the pain in my eye ,temple and right face was dismissed. Now I have stabbing pains in my eyebrow and temp!e but it is put down to hayfever or sinus probs. Agonizing pain in the temple really is ki!king me and what am I prescribed: Statind and blood thinners ! Honestly,why add to my pain ?
apollonia6656, Sorry to hear you too are going through this life challenge. What's helped me the most is yoga and meditation, these are two things you can benefit from greatly because they help your mental state that the illness and the lack of physicians leave depleted! I wish I had more to offer, please know that I believe you, and hope you find the support you deserve.👍💕🙏🏻
My goodness! These are all symptoms I have! I just recently started having dry eyes and mouth. I have pretty much everything else. I was diagnosed with fibromyalgia. I’ve tried going to the cardiac doctor cause I am constantly having weird sensations in my heart and lightheaded feelings, my chest always feels like I have a chest cold. I could go in. I would live to visit you who understands this! I’m in the DC area and have given up on doctors as they always tell me I’m fine. I’m emotional about this video because it gives me hope and makes me feel validated.
Thank you, Dr. Girnita. This was one of best rheumatology-focused videos about the overview of Sjogren's. Your video was shared in my online Sjogren's support group and plan to watch more of your videos. I was dx'd in 2020 during the height of the pandemic. My worst symptoms were GI and GERD. Right now, I have been experiencing shortness of breath due to exertion and have undergone extensive pulm and cardiac testing. Like the patient you discussed, all my symptoms over the years were blow off as perimenopausal and had dry eyes for 10 years. I was diagnosed a few days before my 48th birthday. I have lost count of how many specialists I have seen. Thank you so much for sharing your knowledge and enphasizing that Sjogren's is a disease and not a syndrome. We need more informed and educated rheumatologists out there like you who dont dismiss this disease as a nuisance "sicca" diseases!
This is a very important teaching program! Your introductory statement included "It is not in your head." That is such a powerful and comforting truth to hear. With my own constellation of symptoms and few positive blood tests to "prove" disease presence, I just continue trying to cope with extreme fatigue and muscle pain, along with many other multi system symptoms. I am most curious about your mention of IGg antibodies (precursors to lymphomas and myeloma) as I have MGUS. I am wondering, as I have always suspected, if there is any known connection. Most of all, I would like to thank you, Dr. Girnita, for making me feel seen, even as I struggle to find more and appropriate help for my health challenges.
This is wonderful! I was diagnosed almost 20 years ago and wish that my doctors, including the rheumatologists that I have seen, would watch this video! I’m so grateful that you highlight the other symptoms, beyond dryness and the systemic issues!
Yes...was originally told Fibromyalgia. Have Formally been diagnosed with Scleraderma, Sjorgens, Fibromyalgia,Getds, Raynauds. To say the least many years of frustration & exhaustion. However....i am on my 21 st year of being a Warrior! Your video was Amazing and so needed. I also now realize my " flares" have been my Sjorgens....not Fibro.
After almost 10 years of suffering and numerous doctors telling me i had fibromyalgia i paid to see a rheumatologist and she looked at my bloods along with the symptoms and diagnosed sjogrens im currently on hydroxychloriquine with no improvement for pain etc i finally received a NHS appointment this week so i thought ive nothing to loose by going after waiting for so long ...she said non of my symptoms were anything to do with rheumatoid arthritis or sjogrens she said she didn't know why id been sent to her and i have fibromyalgia and told me to stop the hydroxychloriquine...she even rolled her eyes at me when i was telling her my symptoms im due to see my private rheumatologist in 4weeks so ill see what she says about it all every day is a struggle but makes things harder when you getting different diagnosis 🤦🙏
Hi, I am currently waiting for a second opinion with the NHS, they're awful. I roo have been diagnosed with Firbomyalgia but my symptoms just don't fully fit. It's very frustrating. Did Sjogrens show in your blood? mine is negative but lip biopsy showed inflammation in the salivary glands but not enough to diagnose SS, I can see me going private. I really hope you get your diagnosis, it's pure negligence.
@@andreacripps739 morning Andrea I've been passed from pillar to post for ages and the last private doc I saw looked at my bloods and said it was sjogrens it's always hard to diagnose I have alot of the symptoms . You must keep trying to get a diagnosis sometimes knowing what you have is a relief because you know what your dealing with .good luck 😘🤞🙏
I had an almost similar story. I was diagnosed with polymyositis and had many symptoms of sojourns. My teeth are rotting out. Finally my pcp put me on pilocarpine. My rheumatologist just treat me for fibromyalgia. This is a great video. I’m now on 60mg of steroids which can’t last forever.
Thank you for saying “its not in our heads” the moment you said out I knew that you care about your patients ❤ I was diagnosed with Sjrogrens, Lupus SLE and lung disease 🥰 I’m going to subscribe thank you❤️🇦🇺
I am a 56 year old male, and I present with all these symptoms. I have been complaining to my doctors for ages, about my symptoms (which may not be sjogren, but presents the same symptoms), but the GP practices are to lazy to refer me, just simply appease me with basic tests, then tell me everything is fine. What advice would you give me please?
I felt like you were describing me to the exact T !! Everything stated I've been suffering thru for a good 20 yrs. The last 3 yrs I've been hospitalized too many times and each time they don't know what to do because they don't know what is causing all my health issues. My eye surgeon has told my doctors that I have been suffering with this yrs hence why I've had multiple eye surgeries. But the primary doctor refuses, and the rheumatoid specialist refuses to believe the surgeon. Meanwhile, I'm decaying rapidly and am at the point that I keep praying for the Lord to take me home. Prayers for all who have this, I know what you are all going thru 🙏
I feel very fortunate that my PCP (who I had for about 30 years) right away tested me for Sjogren’s antibodies. It was negative, but now I’m getting a lot of more tests done by a rheumatologist.
I started having arthritis when I was 16. At the same time my brother started having rheumatoid arthritis problems. They diagnosed his rheumatoid arthritis pretty quickly but I was 53 and had arthritis so bad my legs were permanently bent and I was in a wheelchair before I was sent to a Rheumatologist and diagnosed with Sjogren’s Syndrome. I had had to go on disability at age 50. So I clearly had it for many years before diagnosis. It flared up once so bad, after I knew I had it and was taking Hydroxychloroquine, I had the butterfly rash on my face which usually goes with Lupus, and although I felt just like I normally do, I lost 1 to 2 pounds a day between Thanksgiving and New Year’s Day. I was overeating just like I always do at the holidays. I usually gain 10 pounds. But I lost 50 without dieting. Some people asked me how I lost so much weight. I told them I was on the cinnamon roll diet (my mom worked at Whataburger and we would eat a cinnamon roll almost every day). They said “Does that work?” I said “no”, I was sick! Now Sjogren’s is at it again and I’ve been losing a pound a day. I’ve been feeling real bad this time.?We’ll see how it goes.
Wow! I gained a ton of weight in a yrs time but was thin my whole life. I was eating poorly but I thought but I thought it was a med i was on. But all of a sudden my weight started dropping. I lost 100 lbs in a yr. I thought it was bc I stopped this medication. Maybe it wasn't related bc I've been diagnosed with sjrogrens syndrome. Thx for sharing.
I too have R.A. and the pain is excruciating all over and not the same as when I was diagnosed. I'm on a second medication and at a stand still,after 8 years.I too have loss weight in the last 7 months of 30 lbs.,a rate of 10 per month now.Im really at my whits end and haveing so much trouble with daily activities, basic simple stuff Unbuttoning my jeans,my belt buckle, caps on bottles,tearing open packageing,shaveing and brushing my teeth.
Danke, dass Sie Ihr Wissen so offen mit uns teilen. Ich bin ebenso betroffen, zusätzlich Relapsing Polychondritis. Diese Informationen sind so wichtig für uns. Aber auch für Menschen, die zufällig drauf stoßen und sich darin erkennen oder einfach nur Menschen, die dann vielleicht nennt Verständnis für Menschen mit vielfach Erkrankten aufbringen. Ichs habe mir den Kanal schon lange abonniert. In Deutschland findet man keine Aufklärung in dieser Qualität. Einfach auf den Punkt gebracht. Lieben Dank!!!
Very important, infections but ALSO VACCINATION can activate, cause a flare, worsen, and even cause this and/or any other autoimmune condition, specially if the vaccinations are too often and with little periods of time between each shot
Very informative. Many of us didn't know about sjogren's syndrome . But you have really put everything so detailed and easy to understand. It's really a complex syndrome that completely shakes u . Thanks for sharing
On the NHS you only get 5 mins and allowed to talk about just one health issue or one symptom. If you are lucky you may get two appointments in a month. So calculate how many appointments a person will need to get through the symptoms of sjorgens. By then the GP has already forgotten or started to overlook the first symptoms you came in with a year earlier
Cut to the chase. Please request ANA blood test on your next dr visit. (Anti-nuclear antibody test) ...if you suspect an auto immune problem and have a bunch of weird seemingly unrelated symptoms.. this will save everybody time and confusion
@@bagpussozzy9594 Yes, I also live in the UK and like you, have found the NHS particularly unhelpful. What you say about seeing GPs is completely true because they just haven't got the time to spend on you if your problems are not easy to diagnose. In addition, it is extremely difficult to see the same GP so you have to repeat what you said last time, with each new GP seemingly incapable of reading or understanding your medical notes. You go to them for help but end up wanting to pull your hair out! I've had a strange mix of disorders for over 40 years (I am 66 years now), especially the very dry mouth, sores on my tongue which often make eating and speaking painful, difficulty swallowing, getting out of breath on the slightest exertion, plus fatigue and exhaustion, sore eyes and problems with my eyesight and when I tried to breast feed my daughter 33 years ago, my breast milk just wasn't good enough for her and the Health Visitor advised me to feed her formula milk instead. I also have abdominal problems, which I've had all my life from babyhood, and painful wrists and thumbs which have started in the last 5 years. No doctor has been able to explain what is causing these things and I've sometimes been treated like I'm either mentally ill or just making it up. Although some NHS doctors have been rude to me , for eg one young GP shouted at me "Go home and be useful!" others have been kind and tried to help. However, besides depression, no GP or specialist has been able to give me a diagnosis that brings these strange symptoms together or to find any treatment that alleviates them. Some days I feel like I''m a freak! However, today may be my very lucky day! This video covered many symptoms that I've had for ages. It might be another dead end, but Sjorgens might just explain things! Thank you to the doctor who made this informative video and thank you to bagpussozzy for your accurate assessment of NHS appointments. Keep strong and never surrender!
I have Sjogrens and it’s been so bad for years and I’m not getting any help from the specialist where I live. U have made me feel sane for the first time in a long time. I feel like I’m going crazy.
From a continent away .Thank you for your informative talks. Love it that you say " stay curious" for with chronic diffuse conditions it helps so much to find out as much as one can.
Thank you for this video! I am currently getting ready to make an appointment with a rheumatologist and an endocrinologist. I found a new PCP who listened to me. I participated in Ramadan and was trying hard to find ways to mitigate the extreme dryness but eventually my throat gave up. It took a week to recover my voice fully and feel relatively normal again. I did finally see an eye doctor, 2 kinds of dry eye. Dental issues my whole adult life whereas when I was a kid I had none. It's just been an ongoing thing. I remember you mentioning hand and wrist issues in a video. In both wrists, I have had a total of 10 injections in my wrists and bilateral carpal tunnel. My next step is endoscopic correction of "mommy thumb" once these shots wear off. I BARELY produced breast milk for my baby and it destroyed me mentally for months. I tried everything, hydrating, body armor, lactation cookies and candies and everything. It ruined my mental state.
@rheumatologistoncall Thank you for your reply. A blood test showed sjrogrens syndrome but antibody convinced her I haven't got it. My symptoms are many and quite bad at the moment. I can hardly stand up and brain fog in the mornings.
@maryshanley329 I totally agree with you, I'm UK, but after yearly Eye Test, I was showing problems. So much so I was sent for MRI Scan, then rushed for ACDF Procedure. Problems are still ongoing, but I'm in system. It's frustrating, knowing I feel so unwell, but having to put up with it, in past I've put everything down to Fibromyalgia, after having Operation to fix plate and screws in neck, I think we all need to look further into problems, Don't put everything down to 1 condition, as I had done since 2015. Wish you well @maryshanley329 also Everyone else suffering.
Very informative video. Does sjogrens cause burning feet also? I have lots of those symptoms but it all started with burning feet. The dry eyes and mouth came later, but I am told they are menopause symptoms.
Burning feet would be a type of peripheral neuropathy, which is a common symptom of Sjögren’s. I have a lot of neuropathy in my feet as well. Sometimes it is a burning sensation, sometimes tingling, sometimes aching, but always some level of numbness. And I also had the neuropathy in my feet (along with the muscle aches and fatigue), long before the dryness and other issues, @user-bv9sd2xt3p.
@@rheumatologistoncall which video. I have many symptoms plus feet burning and the doctors are unsure of what to do. I have the blood markers as well. Yet they just say they aren’t sure.
I was told by the last rheumatologist I saw that I possibly had Sjogrens but as they typically do, they dismissed me. My feet burn so badly. It used to only happen during episodes of Raynaud's but now it's all the time. I am so defeated by begging for help for years and being handed antidepressants instead.
Thanks for the informative video. I was diagnosed with RA 3 years back but my symptoms had started several years back. Today after I watched this video I noticed that I have most of those symptoms! today I did imaging for my hands and wrists, will wait for the results and come back later. Thanks again Doctor,,appreciated.
Wow! I have had Sjögren’s syndrome for years, I have these issues but did not know it because of Sjogrens because doctors down play it as just dryness. Thank you so much for addressing my concerns. It’s not all in my mind. ❤
Thank you so much for sharing. My md say I have Sjögrens but have not given me a diagnosis nor any treatment. Never knew there are so many serious risks. Norway
It's fortunate you received a diagnosis from your MD, it's difficult to get illness such as Sjogens acknowledged. Can your MD give you a referral to a specialist?
Well to be honest there's no treatment really! At the end of the day you have to understand what are your triggers with me was long periods of stress! Most importantly keep inflammation down and that's an art in its self 👌 good luck
كمريضة شوغرن شكرا من اعماق قلبي. فيديو اختصر المرض بشكل احترافي ارجو ان يكون مرجع للمرضى الذين لم يكتشفوا المرض وكذلك الاطباء حتى يشخصوا بشكل اسرع ودقيق
Thank you so very much! 💜👍 This couldn’t be more on point. And I’m nearly 46. Still feels like a worthless hunt for help even with a diagnosis. Drs seem to want “easy.”
I was diagnosed with Scleroderma, Rynauds, and hypothyroidism in the 1990’s. They said at this time I had that with the dry eyes dry mouth. Now the doctor just say it’s because I have all the medicine I’m on. They did the biopsy years ago and I have the small nerve neuropathy. You were right about the gabapentin. I’ve been on that for years. I just got a Spinal Cord Stimulator to try to see if it will help because I don’t want another fusion on my back. I’m so confused because I know something’s not right and I’m not sure exactly what to do about it. This scleroderma attacked my lungs a few years ago. so now I have 40% scar tissue. I’m on immunosuppressants, two of them. I also have fibromyalgia. I’m having so many problems with my nerves and I see a pulmonologist, rheumatologist, cardiologist, neurologist, and everyone sort of just waiting. I understand it’s hard to fix some thing before it completely breaks, but oh my gosh, this is getting worse and I know it and I’m not sure exactly what to do about it. Your video really was so comforting. Thank you so very very much. I’m going to watch all of your videos.
I also have red, burning feet, symptoms seem worse in winter, other symptoms are joint pain , and neuropathy . I was diagnosed with Sjogren's in 2007, but really thought it only affected the eyes, and salivary glands. Doctor, you are a blessing, thank you for spending your time helping address this disease, very informative and supportive, I appreciate everything you do , thank you again 🩻🩺🙏
Hello. I have the same problem. I was diagnosed with erythromalagia. Its heat related. If you get it winter, could be socks and slippers. For me its outside in heat and also in winter with slippers. Soak feet in cool water, it helps
Thank you so much for your video-it is the best information I have found on Sjogrens since I was diagnosed last year. I started having symptoms 5-7 years ago, but explained them away as depression, hormones running amuck, perimenopause, etc. I was so grateful to finally get a diagnosis & start treatment. However, over the past year I’ve had doubts about my diagnosis. When I initially saw my rheumatologist, I was convinced that I had SLE. I had learned that connective tissue disease ran in my father’s family, & that he had also had SLE. My symptoms were consistent with SLE, including a malar rash, which looked like rosacea. However, my labs were negative for Smith & Anti-DNA. (SSA was positive, hence my Sjogrens diagnosis.) Except for a little dryness of my lips, I’ve never experienced the symptoms of primary Sjogrens. I understand that Sjogrens usually occurs along with SLE or RA. Is it possible that I still have lupus, even though the associated labs were negative? Is it important to get this diagnosis corrected, as long as I’m receiving treatment (hydroxychloroquine)? What I didn’t know before your video, is that Sjogrens is not JUST dryness. Over the past year, I have experienced lung problems like you described (shortness of breath, dry cough, hoarseness) & a couple years ago I was also diagnosed with MGUS, which means I have some risk of developing MM. My voice has become very hoarse. My pulmonary work up was not conclusive, although ILD & cancer were ruled out. Your video has convinced me that I do have sjogrens, even though I don’t have the typical dryness. Should I still be concerned about SLE, or does it matter?
I want to add from my experience. This disease effecting your teeth. Spent a lot of money for on dental implants. Three times they failed to fuse with the bone. Save your money. I also developed holes in my teeth. Didn't have any choice but to put crowns on all of them. Find knowledgeable dentist.
I have Fibromyalgia and Sjogrens. Lifemis not easy. I had to quit working in 2012 and my quality of life is pretty lousy. I'm so exhausted most of the time. I can't hardly sleep at night due to feeling sick to my stomach, and I rarely feel like doing much of anything.
I had this disease all of my life, but didn’t know it until my 40’s. I am now, twenty years later I’m just now learning that it’s been a large part of my health issues and I have a long list of health problems. Yesterday I just found out that my Mitral Valve prolapse can be caused by Sjogren’s Disease. And if that’s not enough last September I went to the hospital because of Heart Failure and Acute Kidney Failure and a few other issues. In my learning session yesterday my CKD can be because of Sjogren’s as well. I am thankful for this video and the comments from others. I feel that living with Sjogren’s is like walking in a field of land mines as you never know what is going to happen from one day to the next.
I have Sjogrens. My head aches so bad. My dentist thinks I may also have TMJ. How do I get my rheumatologist to believe me and my level of pain ? I need relief. 🥲. She indicated that Sjogrens affects BELOW the neck; not the head. I do take Hydroxy, Pilocarpine, and Baclofen. I have learned so much from your channel, Dr. D! Thank you from the bottom of my heart! 💜
I'm sorry to hear about your struggles with Sjogrens and TMJ. It can be frustrating when your healthcare providers don't fully understand your pain. Hang in there, and keep advocating for yourself.
I have SS. My rheumatologist is great. I have RA and Have OA. I described my symptoms to him and I suggested that I may have SS. I asked him if he could test me to look for markers of SS. It came bavk positive. Both of my daughters have juvenile RA . I had them tested for SS as well. Only one daughter has it. You’ve got to be diligent and pray your doctor listens.
Very grateful for your videos. I realize now why some symptoms are worsening. Hitting 60, some I have learned is age related but I have had problems with them earlier. I had an MRI about 5 yrs ago because aunt died of Alzheimer's. Great Psy book explained how it develops and how drs know. I look okay. My memory problems can be traced back to Sjogrens. It has been confusing for me. First diagnosed with FM. Symptoms increased when bio changes, puberty, hitting 30. My immune system was worn out. Too many illnesses. I need to be kinder to myself. O had thr worst anxiety going back to College lately. My recall memory was very bad. Even though I studied so much. My whole body was going haywire. As we know, this happens when we fall out of alignment. I needed more help and sadly had a teacher not sensitive to disabled students. I realize I could have asked counselor to include notes for my tests. I barely passed. Normally an A/B student. You are wonderful and thank you. It means a lot to me to ne able to teach. Illness put so many of my previous skills out of reach and brought a lot of sadness into my life. Accepting limitations and that asking for reasonable accommodations is not a weakness but a necessity. Education is important no matter what a person does. It is important that we find our place in the world and not isolate ourselves too much. I feel a little better today thanks to your great explanation and useful suggestions. Oh, I find coq10 as useful. Sadly expensive but it can be purchased on sale or with subsidies. It makes a difference for me.
Luckily I had a functional medicine doctor who ran tests, and we discovered that I have Sjogren’s and a bunch of other autoimmune diseases (Lupus) But this information in the video blows my mind! I didn’t realize the seriousness of it, and I don’t think she knew, either.
These symptoms mimic many diseases - But most doctors do not FIRST ensure patients have working CO detectors - These symptoms are similar to low level Carbon Monoxide leaks especially from gas water heaters or gas furnaces. Random bad headaches are key!
I think everything I’ve been going through for the last 6 years is finally making sense. I’ve been tossed around from dr. to dr. and each one gives me a different diagnosis. It’s driving me crazy. What testing can be done to prove beyond a doubt that it is Sjogren’s?
It just blows my mind.. blows me away, that people like this woman get in front of a camera ( on top of being in med profession), and milk a extremely painful condition for all it’s worth. WithOUT offering one shred of real help for those who have to go through it. It’s is so so incredibly sad and tragic.
You should look at my channel, look at my videos ( no other physician on YT ) discussed it in such depth…..and read the comments about how many people appreciate that I take from my time to provide education that is FREE for the general public! I understand your frustration going though a disease like that but you should also judge after you see how many solutions I discuss and how many people were appreciative for this information! I guess the fact that my videos on SD had more than 2 million views days there is a huge need for education!
@@rheumatologistoncall let’s be honest ( that would be a feat), your info should be dispensed by ALL doctors, not a “ gift” because most doctors don’t care or are negligent in their assessment of it. Stating your info “ is free”, is in itself quite troubling implying assistance to patients should always come with a financial cost. While your channel at least draws more attention to a very insidious ( auto immune condition ) that I also have, years of not having a cure, or even a an effective means of treating it, drops it onto a very long list of diseases that the medical and scientific establishment never seem to make any head way with. Having 2 million views( only drives home this point ) not validate the success of remedying the problem.
@@rheumatologistoncall my comment is immediately deleted. That speaks volumes to lack of freedom to respond to your replies, and the censorship of platforms like these, most especially from a patients point of view.
@@Yet333 I have never deleted any messages or comments ! If you are accusing me of censorship you are wrong! I have never deleted anyone’s comments! If you post something inappropriate then UA-cam will delete your comments
Before you take the time to accuse someone that is doing something that you don’t agree or like , you try to do something that will impact millions of lives and then see how much hard work it is!
I'd love to known that as well. I'm diagnosed with both. I wonder if it's just sjrogrens syndrome. My back pain is the worst and it sounds and feels like trigger points so I fig it was from Fibromyalgia. IDK if you get that that with sjrogrens syndrome or not. And I'd like to know what are people prescribed? Anything?? And are there certain supplements we should be taking?
Thank you Doctor. Not enough research on our disease. However I feel like the mumps I had in 1967 has something to do with making our salivary glands deficient to the point we end up with countless cavities and countless sore throats. Take care.
Vitamin E helps a lot but proper amount also check for low grade infection’s and gut health but I’m not a doctor so check with yours that what helped me
I WAS DIAGNODED WITH MS BUT EVERYTHING ALL 10 I HAVE. It doesn't matter now my doctor do not care or are uninterested in helping. I new it was something else and this appears to be all my signs and symptoms, atleast I know I'm not crazy.
❤It looks like many others have suffered as I have from the comments. When I wake up my tongue is stuck to the roof of my mouth. I have difficulty swallowing and choke when food or pills get stuck. My son in law did the Heimlich maneuver on me and saved my life. I have been a near invalid for years at different times in my life. Pain is terrible especially during the winter. In my twenties when the tear test was done at the eye Dr. the strip stuck to my eyeball. It took 17 years of debilitating pain before they found fibromyalgia. Now the trouble has left me toothless and with heart disease.
I'm truly sorry to hear about your struggles. It sounds incredibly challenging, but it's inspiring that you're sharing your experience with others. Remember, you're not alone in this, and there are people who understand what you're going through.
Wow, seeing this video all puzzle peaces of all the symptoms I have fall on it's place! I will make an appointment with my doctor and tell her I want to get tested on this disease. To be honest, I already know that this is my problem. It's going on for years, but all my symptoms have never seen by the doctor as coming from ONE thing.
I was grateful to be Dx w/Sjorgren’s. I even had a misdiagnosis with a parotid gland Bx. Since my symptoms did not improve and I was only sleeping 3 hours a night because of my pain. (As a nurse this was NOT enough) So my Family Dr sent me finally to a Rheumatologist and he found the poor interpretation of my Bx. Because I was in my 40’s my Bx only showed inflammation but they were expecting WBC infiltration like a 60 year old.
It could also be menopause as brain fog, not finding your words, fatigue, dryness...lack of estrogen - she could be combination of peri-menopause along with sjogrens.
I was diagnosed several years ago. I lost my health insurance so I have not been able to see a rheumatologist. I just managed it with over the counter meds as much as I can.
I'm really sorry to hear about your situation. It's tough not having access to the care you need. I hope you find a way to get the support and treatment you deserve soon.
I lost all my teeth to dry mouth ; can't have implants (no bone left) so am stuck with full dentures, for which I need TONS of adhesive because no natural suction. I get very thirsty, have swallowing issues, and sex has always been agonising.
I have Sjogren’s Syndrome but also anytime I try a new hobby any joint involved becomes inflamed. I also have other symptoms that lead me to believe I may have a connective tissue disorder. Tendons in my feet and ankles calcify to the point that I ruptured an Achilles tendon just playing with my dog in my living room. The other one started feeling the same way so the podiatrist operated on it before it also ruptured. Also had surgery on other tendons and have had to surgically remove knots of calcium off other areas of my feet. My knees became so bent I was in a wheelchair. We have a shortage of Rheumatologists in Eastern Oklahoma, so unfortunately I have not been able to see one since 2020. I also have pleurisy for the second time in my life.
I started getting symptoms at age 12 to 15. Went to tons of doctors during HS and sabotaged me big time. The dry eye has been excruciating. I wasn't even diagnosed until I was 23. A horrifying and lonely path. It took me until about 2022 to find some effective treatments.
I quit going to the Dr. And rheumatologist. They think it's all in my head even though I tested positive for sjogrens back in 2006. I have had diarrhea for over 20 years, vertigo for the last 10 years and debilitating aches that move around for no apparent reason. I have had weird skin rashes and alopecia. After thousand of dollars in dental care, I figured out chewing gum frequently through out the day and brushing and swishing with hydrogen peroxide ( don't swallow) instead of toothpaste has fixed the dental decay and have had perfect exams for nearly 3 years now. I currently have inflammation in my hip and can barely walk with a cane......
OMG... I have 8 out of 10 of your symptoms...😢 Plus, i was already diagnosed with Lichen planus like 15 years ago, more recent, i developed psoriasis & psoriatic arthritis I have an appointment with a rheumatologist on June 20th. That was the soonest appointment i could get. Thank you for this information.
Great review. For years I have had dry eyes and dry mouth. I had a history of autoimmune hepatitis that resolved after a 6 week course of steroids years ago. Labs now showed elevated ANA, CRP, ESR but neg SSA and SSB. A few months ago because of dry cough and SOB I was diagnosed with Interstitial lung disease from a High Res CT. The pulmonologist was sure it was autoimmune and ordered an early Sjögren’s lab panel. This came back positive. Why is this not routinely ordered in patients with symptoms of Sjögren’s but negative SSA and SSB?
I was diagnosed with SICCA Syndrome in 2023. I believe, after watching this video, that i have had this since i was in my late 20's to early 30's but was diagnosed with Fibromyalgia instead. SICCA is the evil twin of Sjogrens but without the autoimmune component. I had the lip biopsy done last October to verify whether or not i had the autoimmune component. It was negative. But i still have to deal with everything else. I feel like im dehydrating from the inside out. 😢. I can't even cry anymore because my eyes are to dry. Having to have teeth pulled because it has affected my mouth so badly and my breath smells horrible. Plese tell me there is a treatment somewhere out there for SICCA SYNDROME. 😢😢
I wish my Rheumatologist knew as much as you do. You are describing all my symptom and I feel that you understand me. Where is your practice located. Thank you sooo much for the videos ,now I can understand that all.my symptoms are part of SD❤
At 40- I went to an eye specialist due to corneal abrasions & light sensitivity. They were sure I had sjogren's. An ANA test came back negative, so they dismissed it. After cataract surgeries at 51, the repeated retinal tears, a complete retinal detachment, recurring uveitis, and tooth erosions- I still have no diagnosis.
Literally the story of my life. Over the last 12 months have rapidly deteriorated. Can't seem to get access to the right specialist because apparently Western Australia doesn't have them, systems aren't taking patients etc. I'm not even 40. I'm debilitated to the point i Can't go on. I have EVERY SYMPTOM! Except Lymphoma (but maternal uncle was recently diagnosed with stage 4, soooo... ) i also think i have Ehlers Danlos, in addition. But i have NO idea who to see for a proper diagnosis. 😢
I'm sorry to hear about what you're going through. It sounds incredibly tough. Have you tried reaching out to different medical centers or specialists for a second opinion?
I’m not sure what’s going on with me, these symptoms sound a lot like what I’m dealing with; but I started with my diet, and I feel much better when I cut out sugar and dairy. I too, have heard great things about carnivore diet.
Just diagnosed with Sjogren's. Have joint pain and back pain too. Thank goodness my blood tests didn't show any malignancy but did show decrease kidney function with I worried about. Seeing a kidney doctor now.
I'm really sorry to hear about your diagnosis. It sounds like you're going through a tough time, but it's good to know that your blood tests didn't show any malignancy. I hope your visits with the kidney doctor go well and you find some relief soon.
I'm SO angry with my rheumatologist right now!! I was given an antibody test recommended by the Mayo clinic and I tested positive for Sjogren antibodies yet he REFUSES to acknowledge the results. Instead he diagnosed me with Polymyositis. Meanwhile, I've been running to a GI specialist, neurologist, OB/GYN, optometrist, hematologist, and even a psychiatrist for all of these symptoms only because my doctor won't believe the results. This is why he asked for the consult with the clinic in the first place, he couldn't figure out what was wrong with me. Even my fibromyalgia, anemia, and depression is because of Sjogren's ??!!!? 😫 ALL I can do is cry right now yet I'm extremely grateful to finally stumble across this video. I'm dealing with kidney dysfunction now and was just talking with my husband about dialysis options . This disease has robbed me of so much that I was feeling defeated. Now, that I know the truth I'll find a doctor who actually will help instead of allowing me to suffer like this
Get another doctor for sure.
((Gentle hugs)) Ask around and go to someone else! No one is more concerned about your health than you.
I'm sorry you're going through this. Unfortunately, there's no way to reverse the damage. I now have GY problems because of S'jogrens. Try Humira, it might help slow down with progression. Take care and stay well.
Find another doctor in Sue the one that refuses to accept the findings
La Dra Diana es merecedora de un reconocimiento está muy preparada y es admirable su paciencia para instruir a los a pacientes , si ustedes la pueden ir a consultar no esperen más y háganlo ,
Por su enorme empatía es que podemos comprender la enfermedad quienes la padecemos 🙏🇲🇽
It’s a debilitating autoimmune disease. So glad this disease is getting recognised.
Thank you
It is indeed a debilitating disease- it has completely robbed my quality of life. I am 61 and was diagnosed at 46. This is a very serious disease. I am in the midst of filing for disability - I simply can’t function to work anymore. Intense pain and exhaustion/ brain fog and now excessive daytime sleepiness. My dental issues for many years ended up with full prostheses. My feel like someone is hammering them at night. My cough is like that of a daily smoker - and I had a serious bout with pneumonia and a pleural effusion and collapsed lung 2 years ago. I thought I was dying. My SED rate is always elevated and now so is my bilirubin. I deplore this disease and actually think I has this as a very young child. I also have Ankyliosing Spondiltis. Not sure what will happen to me if not approved for disability. My flares are weekly now.
It’s sad how many doctors still think Sjogren’s is “just dry eyes and dry mouth” and don’t know or warn their patients about all these other symptoms/complications.
The patient she describes could be me. What she outlayed was exactly my history. I am 77 and have been misdiagnosed and even mistreated for everything in the book when all I have is Sjogren's disease. The deterioration of the knee joints I have suffered from is not Rhuematoid, nor is it arthritis. It's Sjogren's erosion. I have read that medication to treat our disease is at long last now being developed to help us. I celebrate that finally many younger people will not have to suffer the horrible mistreatment I and millions of others have suffered.
It's unfortunate to hear about your struggles, but it's great that advancements in treatment are being made for Sjogren's disease. Stay strong!
That’s what I thought it was- just dry eyes and mouth. No one told be different. This information is vital for doctors to know! Things are beginning to all make sense, now.
I wish I could see a Dr like yourself. My rheumoltologist dismisses me every 6 months and says that my digestive symptoms, extreme fatigue, brain fog and pain are due to something else. Ive had countless tests run by varying doctors but even my gynecologist believes it to all be Sjogrens related. Why is it seeminly impossible to find a knowledgeable and compassionate rheumatologist? Mine gives me my Plaquenil and sends me on my way never listening or helping with my other symptoms. My stomach hurts day and night no matter the diet I eat and my exhaustion makes living a normal life very difficult. I
I have a lot of these symptoms (for years) and when i mention sjogrens to my doctor I'm just treated like a hypochondriac
I'm sorry to hear that. It can be frustrating when your concerns are not taken seriously by your healthcare provider.
Fire them and get a real doc like this one.
I've been constantly gas light by my doctor for over a year now and it's left me feeling so depressed. I KNOW something is not right with my body 😢
I was diagnosed with MS it took over a year to get a diagnosis but I have All the symptoms of Sjorgen I'm in the UK.
@@MsSparkles25yes I’m the same it’s soul destroying
I was very lucky. My dad diagnosed me with Sjogren’s when I was in my twenties. Since I’d already moved away, though, he wasn’t my regular doctor. Since he passed away five years ago, I sure miss being able to call him up with questions. My pain levels have gone way down, by the way, with a carnivore diet.
So you eat red meat?
@becca4559-yes. Beef and butter. I rarely have lamb since I don’t like it very much.
@AspenCreekLarkspur that's amazing. I'm hearing so many great testimonies with carnivore. I feel sick everyday so im considering carnivore. I'm trying to stick with keto but I eat honey. It's probably defeating the whole purpose.......thank you for sharing. God bless
Carnivore 1,000%❤
@@Becca0082 Red meat is the best, for example from cows, sheep etec, these ruminant animals have four stomachs to detox and ferment out the bad stuff. I live on beef and lamb. I did try a diet of just pork and it had adverse affects, becuase just like chicken, you end up absorbing all the rubbish they eat. In the UK, you can get grass fed beef from Lidl.
I was diagnosed with Lupus in 2017, and Sjögren’s in 2023. I think people should have autoimmune panel run more often than not, in order to get medication and avoid decades of excessive suffering. Thank you for your thorough coverage of this medical condition.
I appreciate your support and I'm glad my coverage has been helpful to you.
Me too.
I was diagnosed with Lupus and Sjorgrens in 2017.
I was diagnosed with Lupus in 1994. Since then I've been diagnosed with Non diabetic neuropathy, fibromyalgia, RA, vasculitis in muscles and brain, trigeminal neuralgia, virtigo, and lastly I'm now thought to have Sjogerns disease. I also have lost my teeth over the years even though I've never had a cavity as child. Total of four cavities in 20's and 30's. That was explained as side effect of IVG treatments. It seems very common for Lupus patients to end up with a long list of diagnoses over the years. I'm 60 now so almost thirty years of different symptoms and diagnoses.
@@KarenSutherland-yv4kv I am so sorry that you are going through these illnesses. They are indeed stressing and debilitating. I’ve had some good luck lately with a tiny pinch of prednisone alongside my hydroxychloroquine. I’m a little older than you however I remember symptoms now identified as SLE Lupus, from when I was a pre-teen. I was finally diagnosed when I was 57. And it was my suggestion to my doctor that maybe I have Lupus. Imagine that. So she ran the tests, and there it was. Sometimes you have to shake your doctor up to make them take that extra step.
Thank you for highlighting the serious systemic issues associated with Sjogren's. I was diagnosed in 2020 after developing symptoms consistent with a viral infection. When the symptoms persisted, my PCP referred me to a rheumatologist as it was suspected that I had an autoimmune condition. I was 62 at the time and considered to be quite healthy before Sjogren's. Since then, I've developed inflammatory arthritis, muscle pain, touch sensitivity, neuropathy, arrythmias, and hypertension in addition to all the dryness issues. Most notably I was diagnosed with PAH in 2022. Although I've been blessed with a wonderful team of physicians, there are too many physicians that know very little about Sjogren's systemic effects. As a patient, it is important to educate yourself about Sjogren's, report all symptoms even if they seem insignificant, and advocate for yourself.
Same here, except for the doctors.
Thank you for sharing your journey with Sjogren's. It's important to raise awareness about the systemic impact of this condition.
I was tested last June for Sjogrens by having a lip biopsy done. The test results were negative. I still have dry eye syndrome, I have fibromyalgia, I have very dry mouth with mapping, now I was diagnosed in January with LSC. Lichen Simplex Chronicus. I also have UC. But my rheumatologist wanted to treat me with Plaquenil but I said no way since I do not have a solid diagnosis. But a lot of symptoms sure heads that way. I’m at a loss……
Since Sjögrens are regarded as a low status women illness little is known by regular doctorss. Even if my dr say I have it, I have never heard of 90% of the symphtoms.
@@2069CalIT takes years and years, and a good doctor to get the right diagnosis. Its a battle, like with all low status women illnesses. Dont ever give up finding the doctor that finally can help you.
I accidentally came across your channel. You are too good as you stick to the fact without beating around the bush or giving unnecessary lengthy explanations. You speak short, concise and straight to the point. Hats off to you.
THANK YOU!!! Love your comment!
11min 35 seconds just because there’s no cure doesn’t mean there aren’t treatments that can help with the symptoms and prevent more serious consequences. This was helpful.
I was diagnosed Sjogren's Syndrome in 2023. This channel it's very helpful, thank you.
Glad to help!THANK YOU, more videos will come!
this Saturday another video!
I have SS but I went on an elimination diet in Feb & within a week I could have a fan blowing on me & wa la eyes didn't dry out .. My eyes feel wet for the first time in 10 years.. Get off sugar and carbs.
I can literally weep because she is the first doctor who is an expert on this debilitating disease. Thank you a million times over. Thank you for bringing attention to this disease that a lot of professionals and non professionals never even heard of.❤❤❤❤❤❤❤
Thank you
From my experience trauma plays a big role in this as well as gene mutations, vitamin mineral deficiencies and diet. Treat these 4 factors plus incresse gluathione production to cleanse the liver and it becomes much more manageable.
All ot these areas of the body are affected by poor methalation. Some meds are actually very dangerous for this like birth control or methotrexate and folic acid cuts off the ability to absorb folate and b12. Often the treatments make auto immune much worse because we are sensitive to everything that the body percieves as foreign.
Battling auto immunity is so so disabiling. I pray for everyone struggling ❤❤❤
Solid advice!! Thank you!
@@Gabby0770 ❤️❤️
Thanks for sharing❤
Spot on! I have the MTHFR gene mutation. I am overly sensitive to everything under the sun. Thanks for sharing this info! ❤️
@@Lemons2Lemonade2.0 ❣️❣️
This is me!!!! Just got thrown from 1 doc With pills to another. I was originally told I had lupus and RA. Severe pain couldn’t walk and debilitating fatigue (sleeping for days on end) not exaggerating. running low grade fevers. It was a 3 year nightmare! I wish I could find a Doctor like you in my area that actually listens and cares! I had a wonderful rheumatologist but she moved away.
I’ve had a sjogrens diagnosis for 25 years, post pregnancy, after many false diagnoses & mislabelling. Unfortunately here in Scotland a Sjogrens diagnosis is just another label. I’ve got almost all of the 10 signs that u mention, thankfully not lymphoma, but post diagnosis I was told it was a very minor issue & have spent that last 25yrs treating the symptoms & battling it myself. It’s ruined my life & led to chronic disabilities. Thank you for your videos they are very informative. I only wish rheumatologists here took this condition seriously rather than treating it as a non-issue & largely psychological in nature.
I'm so sorry to hear about your struggles with Sjogren's syndrome. It's unfortunate that the condition is not taken seriously in some places. Stay strong!
Well ain't it a fact, the great British NHS (complete BS) I'm also treated the same as yourself or more to fact not treated. Fibromyalgia has wrecked me over the years, now I'm older (60 male UK) I swear this FMS has put 15/20yrs on me and somedays I can barely function at all. ❤
As a long time Sjogren’s and SLE patient, I find this video absolutely the most informative and comprehensive on Sjogren’s disease and I appreciate your thoroughness. I knew Sjogren’s was so much more than dry eyes and dry mouth, but there are still things I learned from this video. I’m looking forward to checking out your library, there’s clearly much more I can learn. Thank you.
THANK YOU, more videos will come!
this Saturday another video!
Really appreciate what you have shared about sjogrens, I may have it and it began 30 years ago, but I became so beat up by doctors because my symptoms were all over. I did have all kinds of blood test, my thyroid crashed with hashimotos, I had sicca syndrome, my eyes are so incredibly dry, vision really blurred, all kinds of cavities and root canals, with some strange bony like growths on my gum line. In the beginning I ran a low grade fever 99 to 101 daily for several years, I became peri menapausal at 36 and stopped having periods all together at 40. I used to walk to work every day for 7 yrs. without any problems, but once this began I started to lose feeling in my feet, developed significant shin splints and shut muscles down in my legs, I had to stop walking. Also developed COPD, a hiatal hernia (food was constantly getting stuck in my throat, which is really painful). Muscles and tendons are a mess, I keep getting horrible spasms even around my midsection, Charly horses in my calves and hamstrings, hands etc. I had chronic anemia, my brain feels horrible with all kinds of migraines, heavy fog and a floating like sensation, ptosis, eye bleeds where a vein pops and a sac of blood forms, some form of arthritis, super dry skin, multiple chemical sensitivities. In the beginning a positive ANA 1-640, chirossis, and many other positive test, it's just been a nightmare. One important caveat, When I was about 30 I stupidly got breast implants because I was so small, a triple A on the Right and a double A on the left, it was less than a year after I slowly began to develop this nightmare list of symptoms. One was ruptured and they both burned my chest wall all the time so I had them removed and did not replace them hoping I would get better. I now have ptsd dealing with physicians so I gave up going, I'm 68 now it's certainly been a humbling experience but listening to your video I may get up the courage to try again. Thank you so much for addressing this issue.❤️👍
Thank you for sharing your story. It sounds like you've been through a lot, and I appreciate you taking the time to watch my video.
You just described me … I’ve completely given up on Doctors and the fatigue is mind blowing it completely stops your world… but I want to feel better I’ll be 50 in a few months I would love to have my life back ..
tracieelrod7018,
Really sorry to hear that you are suffering too. There are good doctors out there, but financially they are out of reach for me anyway. Did you get breast augmentation, or are and if so, did you get them removed? Or is it that my symptoms without the above sound like yours?
Yep, all the symptoms and more in my case, but doctors just think it is fibromyalgia or simple ignore the whole picture.
All my life I have been suffering with every symptom you can mention and now palpitations and nausea are out down to anxiety !
Had a "Stroke" but the pain in my eye ,temple and right face was dismissed. Now I have stabbing pains in my eyebrow and temp!e but it is put down to hayfever or sinus probs. Agonizing pain in the temple really is ki!king me and what am I prescribed: Statind and blood thinners !
Honestly,why add to my pain ?
apollonia6656,
Sorry to hear you too are going through this life challenge. What's helped me the most is yoga and meditation, these are two things you can benefit from greatly because they help your mental state that the illness and the lack of physicians leave depleted! I wish I had more to offer, please know that I believe you, and hope you find the support you deserve.👍💕🙏🏻
My goodness! These are all symptoms I have! I just recently started having dry eyes and mouth. I have pretty much everything else. I was diagnosed with fibromyalgia. I’ve tried going to the cardiac doctor cause I am constantly having weird sensations in my heart and lightheaded feelings, my chest always feels like I have a chest cold. I could go in. I would live to visit you who understands this! I’m in the DC area and have given up on doctors as they always tell me I’m fine. I’m emotional about this video because it gives me hope and makes me feel validated.
My friend has been diagnosed with this. She had symptoms for years and finally they have told her what it is..
I'm sorry to hear about your friend's diagnosis. It must be a challenging time for her.
Thank you, Dr. Girnita. This was one of best rheumatology-focused videos about the overview of Sjogren's. Your video was shared in my online Sjogren's support group and plan to watch more of your videos. I was dx'd in 2020 during the height of the pandemic. My worst symptoms were GI and GERD. Right now, I have been experiencing shortness of breath due to exertion and have undergone extensive pulm and cardiac testing. Like the patient you discussed, all my symptoms over the years were blow off as perimenopausal and had dry eyes for 10 years. I was diagnosed a few days before my 48th birthday. I have lost count of how many specialists I have seen. Thank you so much for sharing your knowledge and enphasizing that Sjogren's is a disease and not a syndrome. We need more informed and educated rheumatologists out there like you who dont dismiss this disease as a nuisance "sicca" diseases!
Thank you so much for watching my videos! please share them in your community!I have many videos!
THANK YOU, more videos will come!
this Saturday another video!
This is a very important teaching program!
Your introductory statement included "It is not in your head." That is such a powerful and comforting truth to hear.
With my own constellation of symptoms and few positive blood tests to "prove" disease presence, I just continue trying to cope with extreme fatigue and muscle pain, along with many other multi system symptoms.
I am most curious about your mention of IGg antibodies (precursors to lymphomas and myeloma) as I have MGUS. I am wondering, as I have always suspected, if there is any known connection.
Most of all, I would like to thank you, Dr. Girnita, for making me feel seen, even as I struggle to find more and appropriate help for my health challenges.
Thank you for sharing your experience and thoughts. It's important to feel seen and validated in your health journey.
Wow i thought you were describing ME specifically! Its so good to feel like I'm not crazy! Now, to actually get a doctor to believe me!
I have sjogrens and RA. I'm always looking for information videos. I appreciate your educational videos thank you.
Me too!
THANK YOU, more videos will come!
this Saturday another video!
This is wonderful! I was diagnosed almost 20 years ago and wish that my doctors, including the rheumatologists that I have seen, would watch this video! I’m so grateful that you highlight the other symptoms, beyond dryness and the systemic issues!
Thank you for sharing your experience! It's so important to raise awareness about all the symptoms of this condition.
Yes...was originally told Fibromyalgia. Have Formally been diagnosed with Scleraderma, Sjorgens, Fibromyalgia,Getds, Raynauds. To say the least many years of frustration & exhaustion. However....i am on my 21 st year of being a Warrior! Your video was Amazing and so needed. I also now realize my " flares" have been my Sjorgens....not Fibro.
Thanks for sharing
After almost 10 years of suffering and numerous doctors telling me i had fibromyalgia i paid to see a rheumatologist and she looked at my bloods along with the symptoms and diagnosed sjogrens im currently on hydroxychloriquine with no improvement for pain etc i finally received a NHS appointment this week so i thought ive nothing to loose by going after waiting for so long ...she said non of my symptoms were anything to do with rheumatoid arthritis or sjogrens she said she didn't know why id been sent to her and i have fibromyalgia and told me to stop the hydroxychloriquine...she even rolled her eyes at me when i was telling her my symptoms im due to see my private rheumatologist in 4weeks so ill see what she says about it all every day is a struggle but makes things harder when you getting different diagnosis 🤦🙏
Hi, I am currently waiting for a second opinion with the NHS, they're awful. I roo have been diagnosed with Firbomyalgia but my symptoms just don't fully fit. It's very frustrating. Did Sjogrens show in your blood? mine is negative but lip biopsy showed inflammation in the salivary glands but not enough to diagnose SS, I can see me going private. I really hope you get your diagnosis, it's pure negligence.
@@andreacripps739 morning Andrea I've been passed from pillar to post for ages and the last private doc I saw looked at my bloods and said it was sjogrens it's always hard to diagnose I have alot of the symptoms . You must keep trying to get a diagnosis sometimes knowing what you have is a relief because you know what your dealing with .good luck 😘🤞🙏
I had an almost similar story. I was diagnosed with polymyositis and had many symptoms of sojourns. My teeth are rotting out. Finally my pcp put me on pilocarpine. My rheumatologist just treat me for fibromyalgia. This is a great video. I’m now on 60mg of steroids which can’t last forever.
Report the doctor for blowing you off( after you get enough diagnosis).
Hydroxyclorquin is a horrific Rx. 🛐
Thank you for saying “its not in our heads” the moment you said out I knew that you care about your patients ❤ I was diagnosed with Sjrogrens, Lupus SLE and lung disease 🥰 I’m going to subscribe thank you❤️🇦🇺
That's so kind of you to say! I truly care about my viewers and their well-being.
I have recently been diagnosed with Sjogrens, and i love you channel it is very informative, thank you
Thank you ! You have many videos about Sjogrens
I am a 56 year old male, and I present with all these symptoms.
I have been complaining to my doctors for ages, about my symptoms (which may not be sjogren, but presents the same symptoms), but the GP practices are to lazy to refer me, just simply appease me with basic tests, then tell me everything is fine.
What advice would you give me please?
I felt like you were describing me to the exact T !! Everything stated I've been suffering thru for a good 20 yrs. The last 3 yrs I've been hospitalized too many times and each time they don't know what to do because they don't know what is causing all my health issues. My eye surgeon has told my doctors that I have been suffering with this yrs hence why I've had multiple eye surgeries. But the primary doctor refuses, and the rheumatoid specialist refuses to believe the surgeon. Meanwhile, I'm decaying rapidly and am at the point that I keep praying for the Lord to take me home. Prayers for all who have this, I know what you are all going thru 🙏
I'm so sorry to hear about all the challenges you've been facing. Stay strong and keep fighting!
I feel very fortunate that my PCP (who I had for about 30 years) right away tested me for Sjogren’s antibodies. It was negative, but now I’m getting a lot of more tests done by a rheumatologist.
Thanks for sharing!
Thank you sooooo much Dr. I truly believe I finally found an answer to my questions! May G-D continue to bless you and your work!
Thank you
I started having arthritis when I was 16. At the same time my brother started having rheumatoid arthritis problems. They diagnosed his rheumatoid arthritis pretty quickly but I was 53 and had arthritis so bad my legs were permanently bent and I was in a wheelchair before I was sent to a Rheumatologist and diagnosed with Sjogren’s Syndrome. I had had to go on disability at age 50. So I clearly had it for many years before diagnosis. It flared up once so bad, after I knew I had it and was taking Hydroxychloroquine, I had the butterfly rash on my face which usually goes with Lupus, and although I felt just like I normally do, I lost 1 to 2 pounds a day between Thanksgiving and New Year’s Day. I was overeating just like I always do at the holidays. I usually gain 10 pounds. But I lost 50 without dieting. Some people asked me how I lost so much weight. I told them I was on the cinnamon roll diet (my mom worked at Whataburger and we would eat a cinnamon roll almost every day). They said “Does that work?” I said “no”, I was sick! Now Sjogren’s is at it again and I’ve been losing a pound a day. I’ve been feeling real bad this time.?We’ll see how it goes.
Wow! I gained a ton of weight in a yrs time but was thin my whole life. I was eating poorly but I thought but I thought it was a med i was on. But all of a sudden my weight started dropping. I lost 100 lbs in a yr. I thought it was bc I stopped this medication. Maybe it wasn't related bc I've been diagnosed with sjrogrens syndrome. Thx for sharing.
Thank you for sharing your journey with us!
I too have R.A. and the pain is excruciating all over and not the same as when I was diagnosed. I'm on a second medication and at a stand still,after 8 years.I too have loss weight in the last 7 months of 30 lbs.,a rate of 10 per month now.Im really at my whits end and haveing so much trouble with daily activities, basic simple stuff Unbuttoning my jeans,my belt buckle, caps on bottles,tearing open packageing,shaveing and brushing my teeth.
Danke, dass Sie Ihr Wissen so offen mit uns teilen. Ich bin ebenso betroffen, zusätzlich Relapsing Polychondritis.
Diese Informationen sind so wichtig für uns. Aber auch für Menschen, die zufällig drauf stoßen und sich darin erkennen oder einfach nur Menschen, die dann vielleicht nennt Verständnis für Menschen mit vielfach Erkrankten aufbringen.
Ichs habe mir den Kanal schon lange abonniert.
In Deutschland findet man keine Aufklärung in dieser Qualität. Einfach auf den Punkt gebracht.
Lieben Dank!!!
thank you
Genau so ist es.
Very important, infections but ALSO VACCINATION can activate, cause a flare, worsen, and even cause this and/or any other autoimmune condition, specially if the vaccinations are too often and with little periods of time between each shot
Every Autoimmune Disease needs tested for if you have been diagnosed with one. Another Autoimmune Disease will usually follow another.
It's important to stay on top of your health and get tested regularly if you have an autoimmune disease.
Very informative. Many of us didn't know about sjogren's syndrome . But you have really put everything so detailed and easy to understand. It's really a complex syndrome that completely shakes u . Thanks for sharing
Glad it was helpful!
not sure how long this bucket of illnesses getting a name but good luck getting diagnosis in your 5 minute dr visit
There’s a blood test
It can definitely be frustrating to navigate the world of diagnoses, but don't lose hope!
On the NHS you only get 5 mins and allowed to talk about just one health issue or one symptom.
If you are lucky you may get two appointments in a month.
So calculate how many appointments a person will need to get through the symptoms of sjorgens.
By then the GP has already forgotten or started to overlook the first symptoms you came in with a year earlier
Cut to the chase.
Please request ANA blood test on your next dr visit. (Anti-nuclear antibody test)
...if you suspect an auto immune problem and have a bunch of weird seemingly unrelated symptoms.. this will save everybody time and confusion
@@bagpussozzy9594 Yes, I also live in the UK and like you, have found the NHS particularly unhelpful. What you say about seeing GPs is completely true because they just haven't got the time to spend on you if your problems are not easy to diagnose. In addition, it is extremely difficult to see the same GP so you have to repeat what you said last time, with each new GP seemingly incapable of reading or understanding your medical notes. You go to them for help but end up wanting to pull your hair out! I've had a strange mix of disorders for over 40 years (I am 66 years now), especially the very dry mouth, sores on my tongue which often make eating and speaking painful, difficulty swallowing, getting out of breath on the slightest exertion, plus fatigue and exhaustion, sore eyes and problems with my eyesight and when I tried to breast feed my daughter 33 years ago, my breast milk just wasn't good enough for her and the Health Visitor advised me to feed her formula milk instead. I also have abdominal problems, which I've had all my life from babyhood, and painful wrists and thumbs which have started in the last 5 years. No doctor has been able to explain what is causing these things and I've sometimes been treated like I'm either mentally ill or just making it up. Although some NHS doctors have been rude to me , for eg one young GP shouted at me "Go home and be useful!" others have been kind and tried to help. However, besides depression, no GP or specialist has been able to give me a diagnosis that brings these strange symptoms together or to find any treatment that alleviates them. Some days I feel like I''m a freak! However, today may be my very lucky day! This video covered many symptoms that I've had for ages. It might be another dead end, but Sjorgens might just explain things! Thank you to the doctor who made this informative video and thank you to bagpussozzy for your accurate assessment of NHS appointments. Keep strong and never surrender!
I have Sjogrens and it’s been so bad for years and I’m not getting any help from the specialist where I live. U have made me feel sane for the first time in a long time. I feel like I’m going crazy.
Thank you for watching my channel!
From a continent away .Thank you for your informative talks.
Love it that you say " stay curious" for with chronic diffuse conditions it helps so much to find out as much as one can.
Wonderful!Thank you!!!!
Thank you for this video! I am currently getting ready to make an appointment with a rheumatologist and an endocrinologist. I found a new PCP who listened to me.
I participated in Ramadan and was trying hard to find ways to mitigate the extreme dryness but eventually my throat gave up. It took a week to recover my voice fully and feel relatively normal again.
I did finally see an eye doctor, 2 kinds of dry eye.
Dental issues my whole adult life whereas when I was a kid I had none.
It's just been an ongoing thing. I remember you mentioning hand and wrist issues in a video. In both wrists, I have had a total of 10 injections in my wrists and bilateral carpal tunnel. My next step is endoscopic correction of "mommy thumb" once these shots wear off.
I BARELY produced breast milk for my baby and it destroyed me mentally for months. I tried everything, hydrating, body armor, lactation cookies and candies and everything. It ruined my mental state.
It sounds like you've been through a lot, but it's great that you're taking steps to address your health concerns. Stay strong!
Why do GPs refuse to acknowledge this, the symptoms are quite obvious.
It's frustrating when doctors overlook obvious symptoms. Have you tried seeking a second opinion?
@rheumatologistoncall Thank you for your reply. A blood test showed sjrogrens syndrome but antibody convinced her I haven't got it. My symptoms are many and quite bad at the moment. I can hardly stand up and brain fog in the mornings.
A good ophthalmologist should easily diagnose this.
I has a great eye doc who had done his residency at the Mayo
Clinic.
It's so important to have a skilled ophthalmologist for your eye care needs.
@maryshanley329 I totally agree with you, I'm UK, but after yearly Eye Test, I was showing problems. So much so I was sent for MRI Scan, then rushed for ACDF Procedure. Problems are still ongoing, but I'm in system. It's frustrating, knowing I feel so unwell, but having to put up with it, in past I've put everything down to Fibromyalgia, after having Operation to fix plate and screws in neck, I think we all need to look further into problems, Don't put everything down to 1 condition, as I had done since 2015. Wish you well @maryshanley329 also Everyone else suffering.
You’re a breath of fresh air ! Do you have this condition ? If not your a very caring Dr .
I dont have this, but I am here happy to help people!
Very informative video. Does sjogrens cause burning feet also? I have lots of those symptoms but it all started with burning feet. The dry eyes and mouth came later, but I am told they are menopause symptoms.
Burning feet would be a type of peripheral neuropathy, which is a common symptom of Sjögren’s. I have a lot of neuropathy in my feet as well. Sometimes it is a burning sensation, sometimes tingling, sometimes aching, but always some level of numbness. And I also had the neuropathy in my feet (along with the muscle aches and fatigue), long before the dryness and other issues, @user-bv9sd2xt3p.
YES, watch my next video is about that!
@@rheumatologistoncall which video. I have many symptoms plus feet burning and the doctors are unsure of what to do. I have the blood markers as well. Yet they just say they aren’t sure.
I was told by the last rheumatologist I saw that I possibly had Sjogrens but as they typically do, they dismissed me. My feet burn so badly. It used to only happen during episodes of Raynaud's but now it's all the time. I am so defeated by begging for help for years and being handed antidepressants instead.
joggers. SO special we need more doctors like you 😊❤. Thank you. 😊
thanks
Thanks for the informative video. I was diagnosed with RA 3 years back but my symptoms had started several years back. Today after I watched this video I noticed that I have most of those symptoms! today I did imaging for my hands and wrists, will wait for the results and come back later. Thanks again Doctor,,appreciated.
Wow, thanks Doctor . Everything you said sounds like my life.
THANK YOU, more videos will come!
this Saturday another video!
It's amazing how relatable some advice can be!
Wow, i have been diagnosed with this but i never knew all of these things go with it. Now it all makes sense. Thank you Doctor!
It's great to finally have some clarity, isn't it?
Wow! I have had Sjögren’s syndrome for years, I have these issues but did not know it because of Sjogrens because doctors down play it as just dryness. Thank you so much for addressing my concerns. It’s not all in my mind. ❤
It's great to hear that the video helped address your concerns about Sjögren’s syndrome. You're not alone in facing these challenges!
As always such an informative and important video! Thank you for making this one. ❤
You are so welcome!
Thank you so much for sharing. My md say I have Sjögrens but have not given me a diagnosis nor any treatment. Never knew there are so many serious risks. Norway
It's fortunate you received a diagnosis from your MD, it's difficult to get illness such as Sjogens acknowledged. Can your MD give you a referral to a specialist?
It's important to stay informed about your health condition. I hope you find the right treatment soon.
Well to be honest there's no treatment really! At the end of the day you have to understand what are your triggers with me was long periods of stress! Most importantly keep inflammation down and that's an art in its self 👌 good luck
كمريضة شوغرن شكرا من اعماق قلبي. فيديو اختصر المرض بشكل احترافي ارجو ان يكون مرجع للمرضى الذين لم يكتشفوا المرض وكذلك الاطباء حتى يشخصوا بشكل اسرع ودقيق
Thank you so much for your kind words! I'm glad the video was helpful to you.
I am very grateful for your information that can help others before it gets so far that causes such disabilities.
Thnk you
You are very welcome
Thank you so very much! 💜👍 This couldn’t be more on point. And I’m nearly 46. Still feels like a worthless hunt for help even with a diagnosis. Drs seem to want “easy.”
I'm glad you found the video helpful!
I was diagnosed with Scleroderma, Rynauds, and hypothyroidism in the 1990’s. They said at this time I had that with the dry eyes dry mouth. Now the doctor just say it’s because I have all the medicine I’m on. They did the biopsy years ago and I have the small nerve neuropathy. You were right about the gabapentin. I’ve been on that for years. I just got a Spinal Cord Stimulator to try to see if it will help because I don’t want another fusion on my back. I’m so confused because I know something’s not right and I’m not sure exactly what to do about it. This scleroderma attacked my lungs a few years ago. so now I have 40% scar tissue. I’m on immunosuppressants, two of them. I also have fibromyalgia. I’m having so many problems with my nerves and I see a pulmonologist, rheumatologist, cardiologist, neurologist, and everyone sort of just waiting. I understand it’s hard to fix some thing before it completely breaks, but oh my gosh, this is getting worse and I know it and I’m not sure exactly what to do about it. Your video really was so comforting. Thank you so very very much. I’m going to watch all of your videos.
Thank you Dr. for this very valuable info.
Glad it was helpful!
I also have red, burning feet, symptoms seem worse in winter, other symptoms are joint pain , and neuropathy . I was diagnosed with Sjogren's in 2007, but really thought it only affected the eyes, and salivary glands. Doctor, you are a blessing, thank you for spending your time helping address this disease, very informative and supportive, I appreciate everything you do , thank you again 🩻🩺🙏
It's amazing how diseases like Sjogren's can have such varied symptoms. Hang in there, you're not alone in this journey.
Hello. I have the same problem. I was diagnosed with erythromalagia. Its heat related. If you get it winter, could be socks and slippers. For me its outside in heat and also in winter with slippers. Soak feet in cool water, it helps
I saw a doctor 3 years ago on this and she never told me that I had this but yet the tests showed positive. She kept blowing me off for years
Good to see another rheumatologist!!!
@@rheumatologistoncall I have and they're doing the testing right now
I remember getting my diagnosis and not having ever heard of it before.
It can be overwhelming to receive a diagnosis out of the blue.
Thank you so much for your video-it is the best information I have found on Sjogrens since I was diagnosed last year. I started having symptoms 5-7 years ago, but explained them away as depression, hormones running amuck, perimenopause, etc. I was so grateful to finally get a diagnosis & start treatment. However, over the past year I’ve had doubts about my diagnosis. When I initially saw my rheumatologist, I was convinced that I had SLE. I had learned that connective tissue disease ran in my father’s family, & that he had also had SLE. My symptoms were consistent with SLE, including a malar rash, which looked like rosacea. However, my labs were negative for Smith & Anti-DNA. (SSA was positive, hence my Sjogrens diagnosis.) Except for a little dryness of my lips, I’ve never experienced the symptoms of primary Sjogrens. I understand that Sjogrens usually occurs along with SLE or RA. Is it possible that I still have lupus, even though the associated labs were negative? Is it important to get this diagnosis corrected, as long as I’m receiving treatment (hydroxychloroquine)?
What I didn’t know before your video, is that Sjogrens is not JUST dryness. Over the past year, I have experienced lung problems like you described (shortness of breath, dry cough, hoarseness) & a couple years ago I was also diagnosed with MGUS, which means I have some risk of developing MM. My voice has become very hoarse. My pulmonary work up was not conclusive, although ILD & cancer were ruled out. Your video has convinced me that I do have sjogrens, even though I don’t have the typical dryness. Should I still be concerned about SLE, or does it matter?
More videos are in my channel and more will come!
Thank you so much for all that you share! Always so informative.
You are so welcome!THANK YOU, more videos will come!
this Saturday another video!
Another beautiful vedios thank you dr.
I want to add from my experience. This disease effecting your teeth. Spent a lot of money for on dental implants. Three times they failed to fuse with the bone. Save your money. I also developed holes in my teeth. Didn't have any choice but to put crowns on all of them. Find knowledgeable dentist.
Yep! Money!!!
THANK YOU, more videos will come!
this Saturday another video!
My experience exactly. Dental implant did not take and also have had my crown and bridge removed and five teeth removed.
Yes me too I’ve lost 7 teeth so far and more are loose gum disease loss of bone in jaw
What kind of lymphoma is the usual with Sjogrens ? Non Hodgkins or Hodgkins?
I have Fibromyalgia and Sjogrens.
Lifemis not easy. I had to quit working in 2012 and my quality of life is pretty lousy. I'm so exhausted most of the time. I can't hardly sleep at night due to feeling sick to my stomach, and I rarely feel like doing much of anything.
I'm sorry to hear about your struggles. Hang in there!
I am suffering with you 🙏
I had this disease all of my life, but didn’t know it until my 40’s. I am now, twenty years later I’m just now learning that it’s been a large part of my health issues and I have a long list of health problems. Yesterday I just found out that my Mitral Valve prolapse can be caused by Sjogren’s Disease. And if that’s not enough last September I went to the hospital because of Heart Failure and Acute Kidney Failure and a few other issues. In my learning session yesterday my CKD can be because of Sjogren’s as well. I am thankful for this video and the comments from others. I feel that living with Sjogren’s is like walking in a field of land mines as you never know what is going to happen from one day to the next.
Thank you for sharing your story. It's important to raise awareness about these health issues.
Excellent, informative video. Was diagnosed 2 years ago by my wonderful P.A. Have had symptoms for years.
One has to adjust to it all.
thank you
I have Sjogrens. My head aches so bad. My dentist thinks I may also have TMJ. How do I get my rheumatologist to believe me and my level of pain ? I need relief. 🥲. She indicated that Sjogrens affects BELOW the neck; not the head. I do take Hydroxy, Pilocarpine, and Baclofen. I have learned so much from your channel, Dr. D! Thank you from the bottom of my heart! 💜
I'm sorry to hear about your struggles with Sjogrens and TMJ. It can be frustrating when your healthcare providers don't fully understand your pain. Hang in there, and keep advocating for yourself.
I have SS. My rheumatologist is great. I have RA and Have OA. I described my symptoms to him and I suggested that I may have SS. I asked him if he could test me to look for markers of SS. It came bavk positive. Both of my daughters have juvenile RA . I had them tested for SS as well. Only one daughter has it. You’ve got to be diligent and pray your doctor listens.
It's important to advocate for your health and seek the right tests. Wishing you and your daughters the best in managing your conditions.
Very grateful for your videos. I realize now why some symptoms are worsening.
Hitting 60, some I have learned is age related but I have had problems with them earlier.
I had an MRI about 5 yrs ago because aunt died of Alzheimer's. Great Psy book explained how it develops and how drs know. I look okay. My memory problems can be traced back to Sjogrens.
It has been confusing for me. First diagnosed with FM. Symptoms increased when bio changes, puberty, hitting 30. My immune system was worn out. Too many illnesses.
I need to be kinder to myself. O had thr worst anxiety going back to College lately. My recall memory was very bad. Even though I studied so much. My whole body was going haywire. As we know, this happens when we fall out of alignment. I needed more help and sadly had a teacher not sensitive to disabled students. I realize I could have asked counselor to include notes for my tests. I barely passed. Normally an A/B student.
You are wonderful and thank you. It means a lot to me to ne able to teach. Illness put so many of my previous skills out of reach and brought a lot of sadness into my life.
Accepting limitations and that asking for reasonable accommodations is not a weakness but a necessity. Education is important no matter what a person does. It is important that we find our place in the world and not isolate ourselves too much.
I feel a little better today thanks to your great explanation and useful suggestions.
Oh, I find coq10 as useful. Sadly expensive but it can be purchased on sale or with subsidies. It makes a difference for me.
Luckily I had a functional medicine doctor who ran tests, and we discovered that I have Sjogren’s and a bunch of other autoimmune diseases (Lupus) But this information in the video blows my mind! I didn’t realize the seriousness of it, and I don’t think she knew, either.
It's important to have a doctor who runs thorough tests to get to the root of health issues.
These symptoms mimic many diseases -
But most doctors do not FIRST ensure patients have working CO detectors -
These symptoms are similar to low level Carbon Monoxide leaks especially from gas water heaters or gas furnaces.
Random bad headaches are key!
It's so important to raise awareness about the dangers of carbon monoxide poisoning.
Thank you for this video! It took me 7 years to get my diagnosis
I'm so glad this video could help you on your journey!
I think everything I’ve been going through for the last 6 years is finally making sense. I’ve been tossed around from dr. to dr. and each one gives me a different diagnosis. It’s driving me crazy. What testing can be done to prove beyond a doubt that it is Sjogren’s?
I'm sorry to hear about your struggles, but it's great that you may finally have some clarity on your condition.
Thank you for a wonderful video!♥️ Very informative!
You are so welcome!
Excellent! Thank you!
It just blows my mind.. blows me away, that people like this woman get in front of a camera ( on top of being in med profession), and milk a extremely painful condition for all it’s worth. WithOUT offering one shred of real help for those who have to go through it. It’s is so so incredibly sad and tragic.
You should look at my channel, look at my videos ( no other physician on YT ) discussed it in such depth…..and read the comments about how many people appreciate that I take from my time to provide education that is FREE for the general public! I understand your frustration going though a disease like that but you should also judge after you see how many solutions I discuss and how many people were appreciative for this information! I guess the fact that my videos on SD had more than 2 million views days there is a huge need for education!
@@rheumatologistoncall let’s be honest ( that would be a feat), your info should be dispensed by ALL doctors, not a “ gift” because most doctors don’t care or are negligent in their assessment of it. Stating your info “ is free”, is in itself quite troubling implying assistance to patients should always come with a financial cost. While your channel at least draws more attention to a very insidious ( auto immune condition ) that I also have, years of not having a cure, or even a an effective means of treating it, drops it onto a very long list of diseases that the medical and scientific establishment never seem to make any head way with. Having 2 million views( only drives home this point ) not validate the success of remedying the problem.
@@rheumatologistoncall my comment is immediately deleted. That speaks volumes to lack of freedom to respond to your replies, and the censorship of platforms like these, most especially from a patients point of view.
@@Yet333 I have never deleted any messages or comments ! If you are accusing me of censorship you are wrong! I have never deleted anyone’s comments! If you post something inappropriate then UA-cam will delete your comments
Before you take the time to accuse someone that is doing something that you don’t agree or like , you try to do something that will impact millions of lives and then see how much hard work it is!
Thank you for saying it is actually a complex disease even my board certified rheumatologist doesn't seem to be taking it seriously
Thank you for your comment! It’s crucial for us to shed light on these complex issues, and I appreciate you being part of the conversation.
What is the treatment for this illness? I think I have been misdiagnosed as having fibromyalgia or can you have both?
I'd love to known that as well. I'm diagnosed with both. I wonder if it's just sjrogrens syndrome. My back pain is the worst and it sounds and feels like trigger points so I fig it was from Fibromyalgia. IDK if you get that that with sjrogrens syndrome or not. And I'd like to know what are people prescribed? Anything?? And are there certain supplements we should be taking?
Thank you Doctor. Not enough research on our disease. However I feel like the mumps I had in 1967 has something to do with making our salivary glands deficient to the point we end up with countless cavities and countless sore throats. Take care.
Thank you for sharing your insights. It's important to consider all possible factors when it comes to health issues.
Vitamin E helps a lot but proper amount also check for low grade infection’s and gut health but I’m not a doctor so check with yours that what helped me
It's great to hear that Vitamin E has been helpful for you! Always best to consult with a healthcare professional for personalized advice.
I WAS DIAGNODED WITH MS BUT EVERYTHING ALL 10 I HAVE. It doesn't matter now my doctor do not care or are uninterested in helping. I new it was something else and this appears to be all my signs and symptoms, atleast I know I'm not crazy.
I'm sorry to hear about your diagnosis. It's important to find a doctor who will listen and help you manage your symptoms.
Thanks for all this information!
Glad it was helpful!THANK YOU, more videos will come!
this Saturday another video!
Thank you very much for thesegood informati
So nice of you
❤It looks like many others have suffered as I have from the comments. When I wake up my tongue is stuck to the roof of my mouth. I have difficulty swallowing and choke when food or pills get stuck. My son in law did the Heimlich maneuver on me and saved my life. I have been a near invalid for years at different times in my life. Pain is terrible especially during the winter. In my twenties when the tear test was done at the eye Dr. the strip stuck to my eyeball. It took 17 years of debilitating pain before they found fibromyalgia. Now the trouble has left me toothless and with heart disease.
I'm truly sorry to hear about your struggles. It sounds incredibly challenging, but it's inspiring that you're sharing your experience with others. Remember, you're not alone in this, and there are people who understand what you're going through.
Wow, seeing this video all puzzle peaces of all the symptoms I have fall on it's place! I will make an appointment with my doctor and tell her I want to get tested on this disease. To be honest, I already know that this is my problem. It's going on for years, but all my symptoms have never seen by the doctor as coming from ONE thing.
thank you
I was grateful to be Dx w/Sjorgren’s. I even had a misdiagnosis with a parotid gland Bx. Since my symptoms did not improve and I was only sleeping 3 hours a night because of my pain. (As a nurse this was NOT enough) So my Family Dr sent me finally to a Rheumatologist and he found the poor interpretation of my Bx. Because I was in my 40’s my Bx only showed inflammation but they were expecting WBC infiltration like a 60 year old.
Good to be in the right direction
Thank you Dr Diana, you've reassured me in some ways, I need answers from my Dr
Happy to help!
@@rheumatologistoncall ❤
It could also be menopause as brain fog, not finding your words, fatigue, dryness...lack of estrogen - she could be combination of peri-menopause along with sjogrens.
Thank you for sharing your insight on menopause and its symptoms!
Love this lady! So smart ❤
Thank you so much for your kind words!
I was diagnosed several years ago. I lost my health insurance so I have not been able to see a rheumatologist. I just managed it with over the counter meds as much as I can.
I'm really sorry to hear about your situation. It's tough not having access to the care you need. I hope you find a way to get the support and treatment you deserve soon.
I lost all my teeth to dry mouth ; can't have implants (no bone left) so am stuck with full dentures, for which I need TONS of adhesive because no natural suction. I get very thirsty, have swallowing issues, and sex has always been agonising.
So sorry
I have Sjogren’s Syndrome but also anytime I try a new hobby any joint involved becomes inflamed. I also have other symptoms that lead me to believe I may have a connective tissue disorder. Tendons in my feet and ankles calcify to the point that I ruptured an Achilles tendon just playing with my dog in my living room. The other one started feeling the same way so the podiatrist operated on it before it also ruptured. Also had surgery on other tendons and have had to surgically remove knots of calcium off other areas of my feet. My knees became so bent I was in a wheelchair. We have a shortage of Rheumatologists in Eastern Oklahoma, so unfortunately I have not been able to see one since 2020. I also have pleurisy for the second time in my life.
I started getting symptoms at age 12 to 15. Went to tons of doctors during HS and sabotaged me big time. The dry eye has been excruciating. I wasn't even diagnosed until I was 23. A horrifying and lonely path. It took me until about 2022 to find some effective treatments.
Thank you for sharing your thoughts
I had the really bad dry eye and my optomologist told me to eat oily fish 1-2 x’s a week. It has helped a lot
I quit going to the Dr. And rheumatologist. They think it's all in my head even though I tested positive for sjogrens back in 2006. I have had diarrhea for over 20 years, vertigo for the last 10 years and debilitating aches that move around for no apparent reason. I have had weird skin rashes and alopecia. After thousand of dollars in dental care, I figured out chewing gum frequently through out the day and brushing and swishing with hydrogen peroxide ( don't swallow) instead of toothpaste has fixed the dental decay and have had perfect exams for nearly 3 years now. I currently have inflammation in my hip and can barely walk with a cane......
Sorry to hear that!
OMG... I have 8 out of 10 of your symptoms...😢
Plus, i was already diagnosed with Lichen planus like 15 years ago, more recent, i developed psoriasis & psoriatic arthritis
I have an appointment with a rheumatologist on June 20th. That was the soonest appointment i could get. Thank you for this information.
It's great that you have an appointment with a rheumatologist. Stay positive and proactive about your health.
Yup. On wkend sleeping 28-32/36 hrs! Not a lot of housework gets done.
Thanks for sharing! Sometimes we all need those marathon sleep sessions.
Great review. For years I have had dry eyes and dry mouth. I had a history of autoimmune hepatitis that resolved after a 6 week course of steroids years ago. Labs now showed elevated ANA, CRP, ESR but neg SSA and SSB. A few months ago because of dry cough and SOB I was diagnosed with Interstitial lung disease from a High Res CT. The pulmonologist was sure it was autoimmune and ordered an early Sjögren’s lab panel. This came back positive. Why is this not routinely ordered in patients with symptoms of Sjögren’s but negative SSA and SSB?
THANK YOU, more videos will come!
this Saturday another video!
I was diagnosed with SICCA Syndrome in 2023. I believe, after watching this video, that i have had this since i was in my late 20's to early 30's but was diagnosed with Fibromyalgia instead. SICCA is the evil twin of Sjogrens but without the autoimmune component. I had the lip biopsy done last October to verify whether or not i had the autoimmune component. It was negative. But i still have to deal with everything else. I feel like im dehydrating from the inside out. 😢. I can't even cry anymore because my eyes are to dry. Having to have teeth pulled because it has affected my mouth so badly and my breath smells horrible. Plese tell me there is a treatment somewhere out there for SICCA SYNDROME. 😢😢
www.thorne.com/u/RheumatologistOnCall
I wish my Rheumatologist knew as much as you do. You are describing all my symptom and I feel that you understand me.
Where is your practice located.
Thank you sooo much for the videos ,now I can understand that all.my symptoms are part of SD❤
Rheumatologistoncall.com
Check my website we see patients in multiple states!
At 40- I went to an eye specialist due to corneal abrasions & light sensitivity. They were sure I had sjogren's. An ANA test came back negative, so they dismissed it. After cataract surgeries at 51, the repeated retinal tears, a complete retinal detachment, recurring uveitis, and tooth erosions- I still have no diagnosis.
I'm sorry to hear about your medical journey. It must be frustrating not having a clear diagnosis despite experiencing so many symptoms.
Literally the story of my life. Over the last 12 months have rapidly deteriorated. Can't seem to get access to the right specialist because apparently Western Australia doesn't have them, systems aren't taking patients etc. I'm not even 40. I'm debilitated to the point i Can't go on. I have EVERY SYMPTOM! Except Lymphoma (but maternal uncle was recently diagnosed with stage 4, soooo... ) i also think i have Ehlers Danlos, in addition. But i have NO idea who to see for a proper diagnosis. 😢
I'm sorry to hear about what you're going through. It sounds incredibly tough. Have you tried reaching out to different medical centers or specialists for a second opinion?
@rheumatologistoncall I've been through several. Am currently trying again... it's an affordability and access issue, unfortunately 😕
I’ve discovered in research that hat carnivore lifestyle can greatly improve and at times bring healing from this.🙏🏻
That's amazing! It's always fascinating to hear about the positive impacts of different lifestyles on health.
I’m not sure what’s going on with me, these symptoms sound a lot like what I’m dealing with; but I started with my diet, and I feel much better when I cut out sugar and dairy. I too, have heard great things about carnivore diet.
Carnivore 1,000% totally more than helpful❤
Just diagnosed with Sjogren's. Have joint pain and back pain too. Thank goodness my blood tests didn't show any malignancy but did show decrease kidney function with I worried about. Seeing a kidney doctor now.
I'm really sorry to hear about your diagnosis. It sounds like you're going through a tough time, but it's good to know that your blood tests didn't show any malignancy. I hope your visits with the kidney doctor go well and you find some relief soon.